An Appointment With Neurology

Friday 20th November was popular with our Medics. It also happens to be Joshua's birthday. We were looking at the possibility of cloning! The list was impressive

Rosie Neurology appointment Sheffield Dr
Eve Neurology Appointment Same Doctor
Mum Maxilo Facial Appointment Peterborough.
Rosie Theatre Call for Nottingham
Jonathan Orthoptic Appointment Boston
Social Worker wanting to come to discuss Jonathan
Benefits advisor wanting to come to discuss Jonathan's Finances
And of Course Children in need Day!

Wipe the slate clear Rosie's Surgery took priority and we began the task of rescheduling everything else.
Neurology appointment was the most difficult. But yesterday I got a call from his seceratry telling me he had one appointment available today at his Boston Clinic which child would I like to book in. That was Easy...Eve was not at school, Eve's problems were least well controlled and Eve was the child we had most questions to ask about.

So everyone else off to school and college and new carer and I set off with Eve to Boston! Amazingly the roads were virtually clear and we arrived at the hospital to find several empty disabled spots right outside the clinic! Only snag I discovered that I had left my handbag at home with purse inside! That put paid to doing the shopping on the way home! Thankfully the Disabled parking is still free and Carer had enough money for a coffee later!

the clinic was heaving! To clinics going on which was a little better news. However Dr R who was traveling from Sheffield to Boston had not arrived! Not to worry Eve was asleep, and we sat and nattered with staff and parents and waited. At last he appeared, went in to read his notes and refresh with a cup of coffee and then he started his list. We were second on the list and the peadiatrician was bleeped to let her know that we were next in.
Not much more than half an hour late we were called in.

Dr R Started by looking at the reuslts from our last clinic in May. The nerve conduction tests had come back with normal results which meant that the problems with her heart rate and breathing rate were deffinitely from brain Stem degeneration and caused by autonomic disfunction. We had already had this oppinion from the Metabolic consultant but this really confirmed it.
This means that there is nothing that can be done to change this problem. Her heart rate racing causes her to be extremely fatigued, and puts strain on her heart. Her heart rate slowing puts her at risk of it actually stopping. The same goes for her breathing rate these are probably the most likely events that she could just not come out of at some point.

I was able to talk to Dr R and Dr C about the fact that David and I were really struggling with accepting that there is nothing that can be done to put this right. We struggle to know when things are at a point when we should seek help and when we should sit back and accept it as normal. Dr R said that because her heart rate and breathing rates were so erratic it removed the usual signs of illness. This makes it harder for the Doctors to know when things are really wrong and they rely then on us telling them that Eve is not right.
He went on to say that we did not have to accept or come to terms with there being nothing to be done. It was good for us to challenge and question as it keeps the Doctors alert and able to question themselves. It is too easy for Doctors to become complacent and they need to be challenged.
he went on to say that symptom control was important. He was pleased the spasm and Myoclonic Jerks were under much better control. this was a positive move towards better quality of life. We also talked about the possibility of Night time Ventilation, we were all in agreement that if her night time breathing issues impacted on her daytime quality of life then Night Time ventilation was the right move. Eve's quality of life now is worth preserving.
Eve had slept through most of the conusltation, but was able to respond to our conversation at specific points and was seen to smile and be amused by things we had said. She also burst into laughter when I said that Eve thinks breathing is optional! we all told her it was not funny and she laighed the more!
Dr R said it was important that people recognised that even though Eve's quality of life was different it was still good and she enjoyed life.

Eve has continued to sleep through the rest of the day....this is more common now. She opens her eyes and acknowledges things happening and then drifts back to sleep. She totally missed the Physio's visit not even manageing a brief smile. But has smiled for Christina and Joshua.
Hopefully she is storung up some strength to enjoy a shopping trip tomorrow!

Feeling very drained after todays appointment.
Your prayers appreciated.
Hugs